Mr. Doherty is now writing about how “neurodiversity advocates” would never acknowledge the fact that some people need 24-hour assistance. Even though some have told him flat-out that they receive such assistance, this does not seem to register.
There are usually somewhere between 4 and 6 hours of a day when I do not get assistance, and I would easily qualify for 24-hour assistance if I wanted it. The reason I don’t want it is because having people around all that time is overloading and I rapidly end up far less functional. Which is something that I bet happens to a lot of autistic people who are receiving 24-hour assistance, but whose difficulties doing things are chalked up to being autistic rather than being overloaded by the 24-hour presence of a person in their life. (The overnight assistance I get is carried out through an electronic monitoring system, which significantly cuts down on that problem.)
I have advocated in several different states (including states I don’t live in) for improved services for autistic adults (including autistic adults who are quite unlike me). I have written up detailed information for the Autism Society of America on that topic despite not belonging to the Autism Society of America. I was part of a study carried out for the state of Delaware that interviewed successful adult service users and our staff to find out what worked and what didn’t, and I have presented to the Autism National Committee on a similar topic. I have done informal advocacy work in the offline world for other autistic people receiving services, including autistic people with little or no formal communication system (and also non-autistic people with developmental disabilities, since I’m not exactly going to say “You’re not autistic so I don’t care if you’re getting crappy services or not”). I have given talks to parents on how to assist their children in developing self-advocacy skills (regardless of communication method) and getting the best sort of assistance and avoiding the worst sort for their children, and I have assisted several agencies in training their support staff on both general human rights topics and understanding autistic people.
I have even been to a conference that had the theme of developing support systems for all varieties of people with developmental disabilities needing all levels of assistance, and doing the entire thing outside of institutions (sorry to disappoint the people who love the scare tactic of “People with a certain severity of disability must end up in institutions or die,” but it doesn’t work that way).
I don’t generally talk about all that at once, because it’s just something I do, as the need and situation arises. I don’t get paid. I don’t get (or want) much recognition, in fact in some cases due to the nature of the situations I have to do the entire thing without anyone but one or two people knowing I’m involved at all. I do this because I actually care what happens to other people. And I’m only talking about this right now because I think there’s an assumption that all I do in my life is sit around and blog.
And because I actually care what happens to other people, I don’t go around extrapolating only from my own life. This doesn’t stop people from assuming that I do, but actually I meet and talk with a wide variety of autistic people and also read about their lives as described by themselves or people around them. I also meet, read, and talk with a wide variety of other disabled people, as well as family members and staff. I use as much of this information as I possibly can when doing the sorts of things I do.
This, as well as my own life, is how I know various things about how the real world works out and can work out for autistic people, that often escape people who go on broad generalizations and stereotypes.
For instance, I hear a lot about autistic people who “need” 24-hour support in order to be protected from head-banging or other self-injury. That’s interesting. I didn’t have 24-hour support when I was doing a lot of that. I used to routinely hit myself in the head — with my hands or with objects — until I either blacked out, lost motor control, or became too confused to continue. I once calculated how much I did it and it was far more often than the standards I’ve seen for “severe self-injury”. I probably sustained more brain damage than I ought to have, and I know there was a risk to my life (a risk I’d just as soon not take), but I’m alive. I have seen people with far less severe self-injury than I had, described as “needing 24-hour support to survive” on the basis of their self-injury alone (heck, I have seen people sent to the Judge Rotenberg Center for far less than I’ve done). The results of lacking 24-hour support in that regard are mostly not pleasant, and there might have been a higher risk of death in that time, but I’m not dead. (And in the past year or so I’ve rarely self-injured in that manner, for anyone wondering.)
I also hear a lot about people who “need” 24-hour support because they might walk into traffic. I know a number of autistic people who do that and do not receive 24-hour support. Several of them have been hit by cars that way. Another one has been physically grabbed by bystanders and yanked out of traffic numerous times. While, again, this is not necessarily safe for them or drivers, they and drivers have all survived so far. (I should also point out, having seen several college towns, that non-autistic college students are often more dangerous pedestrians that way than autistic people, and few of them are on 24-hour support plans.)
And I hear about people who “wander off” (always seen as something we do in a quasi-dreamlike state or something, rather than as taking a walk) without proper clothing for the weather, etc. And I remember just three or four years ago ending up across town at three in the morning in shorts and a t-shirt, with nobody around, being barked at by an angry pack of wild dogs and having to wait that out before I could go home. I could tell you plenty of similar stories about other people I’ve known.
Some of us have trouble cooking, remembering to eat, or feeding ourselves. Many of us go hungry as a result. The human body can survive a long time while undernourished or outright starving. We survive, some of us missing meals, some of us missing days and weeks of food. The same way people who can’t afford enough food (a category many of us fall into as well) survive. And some die. But a lot survive.
I’m describing these situations for a reason. Certain kinds and levels of support may be the ideal. But when reality does not match up to that ideal, a lot of people presumed not to be able to survive, do survive. A lot don’t, too, and that is why people need access to whatever kind of assistance is necessary. But one thing I think when I hear about all these people who “need” 24-hour support based on such-and-such a trait, is the amount of people I know who have that trait or even more of that trait than those said to “need” such support, who’ve somehow managed to survive without it. Because they have survived without it, they’re presumed not to have the trait, and not to need the assistance as much as the people already getting the assistance. But the people already getting the assistance might survive too — not that the assistance should be taken away to find out, and not that people should be forced into barely subsisting, but there is not necessarily the fundamental difference of types of people here that some people want to paint it as. Those deemed worthy of assistance get it (sometimes inappropriately, though), and those not deemed worthy of assistance live various kinds of dangerous and unhealthy lives and go overlooked.
There’s also an incredible lack of imagination around possibilities for this assistance. I find it easier to imagine alternate ways of assisting people because I have seen them in action, or heard about them and how they work. I come from an extended family in which many people who would now be considered highly unusual and in need of tons of extra support, were not considered that unusual, and were considered just part of their communities. They got the assistance they needed, more or less, just like everyone else did. Not that there was no ableism, but things were handled a lot differently.
I see almost no understanding or knowledge of that situation in people who seem to declare that institutions are The Only Way to “manage” some people, as if that’s all there has ever been or could be. I also see almost no understanding of that situation in people who take their own culture so much for granted that they can’t see how other cultures could possibly enable and disable people differently than our own culture does. They assume that disabled people (in white middle-class North American anglo cultures) have always been classified, by everyone, in the exact same way, and always stick out like a sore thumb, and are always in need of “special” assistance rather than included in the amount of assistance everyone gives each other as a matter of course. I also see in this the ignorance with which people assume that poorer cultures automatically throw disabled people to the wolves at the earliest opportunity to “save resources” — because it’s assumed that disabled people take resources, give nothing back, and that every culture measures people on some scale of resources allotted. In reality, different cultures (and different parts of different cultures) respond to disability differently, including who they do and don’t view as disabled to begin with. Rather than acting like there’s only one culture on the planet, we could actually learn from this.
The assistance people receive takes many shapes. All people receive a good deal of assistance in their daily lives. Some of these people are totally aware that humans are an interdependent species and that they are beneficiaries of this, and others cling to the illusion that they are independent. Some people receive a kind and amount of assistance that is less common in their culture. If they are rich or royal, this might be expected. If they are receiving the exact same sort of assistance because they are disabled, it might be seen as special and burdensome.
But the way in which assistance is received varies too. There is nothing — at all — special about institutions, that makes them able to provide assistance that nobody else can. In fact, the quality of assistance in institutions tends to be lower than the quality of the same assistance outside of them. And much of what they do provide is not assistance at all, but a kind of anti-assistance that should not be given to anyone. To say there is categorically a kind of person who belongs in them, is false.
Some assistance is taken for granted as part of what communities do for each other — whether for pay or without pay. In my opinion, all assistance, paid or unpaid, needs to be moved into this category eventually, until people do not differentiate in terms of value between bathing someone who can’t bathe themselves and providing food to someone who can’t grow their own food. These should just be things human beings do for each other.
In the world as it is right now, different cultures draw lines in different places between what communities do for each other — and how doing that takes place — and what is “special” and “different” and “burdensome”. It’s time to start erasing those lines.
But in the meantime, there are many different ways of getting assistance to a person. They can live with a person (or more than one) who assists them with all of those “unusual” things. They can live next door to someone who assists them with those things. They can have someone come in and do those things. They can use adaptive equipment and environmental modifications to do those things. They can receive instructions from a distance in how to do those things, or have a computer programmed to walk them through doing those things. It can be a combination of all of these and other things, it just depends on the situation.
Disabled people can also provide assistance to each other. In my first year of living on my own, I only ate at all courtesy of an autistic person on the phone willing to walk me through each step of doing everything (from “move this part of your arm” on up). That was not an ideal situation but we did it because that was the best method of support available at the time. I now live down the hall from her, since we’re good friends now. And we still provide some assistance to each other.
Both of us, mind you, are officially classified as severely disabled and we can provide at least some assistance to each other. I do a lot of random physical tasks for her that she has trouble doing because she can’t walk, and I also am apparently better at putting her compression boots on her than her staff are. I am not good at organizing myself to do even basic things, but I can take directions if they’re given in exactly the right way. She provides a lot of support when I’m overloaded or shutting down, and for a lot of the confusion I get into with everyday living stuff. We stick by each other in crises even if we’re sick of each other. We don’t do this full-time (neither of us could, and neither of us wants to), but we do little things for each other all the time, because we’re friends, and most friends, disabled or not, do things for each other when they can.
My failure to support the same things Mr. Doherty supports stems not from my having not seen various real-life situations, but in fact from my possibly having seen more real-life situations, more ways of doing things, and more variation among people, than he has. And I try to look at all disabled people, not just autistic people, and all people, not just disabled people. And what I see — all the way around — is a far greater range of options than the way things are currently seen in a few very dominant cultures. And a need for people to recognize their total interdependence and act on that recognition before it’s too late — for all of us. When I look at that whole situation, I can’t see the standard approach to autism as effective, ethical, or even truly advantageous, for anyone. We need to be looking at more ways for human beings to support and assist other human beings (regardless of what category those human beings fall into) — not ways to eradicate certain categories of human beings.
Just curious: have you been involved at all with the Independent Living Center movement? Or are they too focused on the needs of people with mobility impairments and not enough on cognitive disabilities for your taste? If the latter, have you, or other autistic advocates, tried to advocate with them on being more inclusive of the needs of autistics, or have you been focusing your energies elsewhere?
For my part, I never even heard of ILCs until I started getting more involved with cross-disability issues a few years ago. Which says something for their relative lack of importance among Deaf people because I would certainly have heard of them otherwise. But it occurred to me to ask because, at least from my relatively ignorant stance on the outside looking in, there would seem to be a lot of parrallels between what most independent living centers are trying to accomplish for people with mobility impairments and what you have been trying to accomplish for autistic people and people with developmental disabilities generally. Whether or not most ILCs would see it that way (do they?). I realize that some of the specific services that autistic people need are different from what people with mobility impairments need and vice versa, but the goal to live independently is shared in common.
I haven’t had particularly great experiences with them, and when I have it’s been an aberration (like one cognitively disabled guy working there who eventually ended up quitting). And the local one is ridiculous and doesn’t even properly help people with mobility impairments. I know several autistic and other cognitively disabled people who’ve been basically sidelined, tokenized, and/or run out of CILs.
I’ve also long been wary of centers of any kind like that (CILs, psych “consumer-run” centers, women’s crisis centers, and other places ostensibly run by the people who would use their services) that receive government funding. They seem to take on the worst attributes of the systems they are supposedly replacing, only now with the “authenticity” of being run by the same sort of people who’d be getting services there. And they are restricted to doing things that won’t get them defunded.
In fact the only thing I’ve seen successfully done like that was a Deaf school, and I’m not Deaf so I don’t even know whether the internal politics of those places are similar to CILs and stuff.
I should also point out, having seen several college towns, that non-autistic college students are often more dangerous pedestrians that way than autistic people, and few of them are on 24-hour support plans.
Hah, yeah– what about the guy in the apartment upstairs from us whose friend came over, got completely drunk, was determined to drive home and they had to hide his keys to get him to stay until he was sober again? Too often, the friends don’t care and just let them go off drunk. Should someone be in the apartment 24 hours a day with him to keep an eye on how much he’s drinking? We’ve known a heck of a lot of non-autistic college students who could have benefitted from that. And what about non-autistic people who injure, and end up in the ER when they cut themselves and went a little too deep?
…not that I support the crap that gets done to people judged to be “a danger to themselves,” which people will often declare you to be on the basis of far less than having actually deliberately physically injured yourself. I just find the whole idea that self-injury, even “extreme self-injury,” is exclusive to autistic people, to be pretty mindblowing, having been in some communities where it was completely routine for people to come in and say things like “Today I couldn’t take the pain any more, so I went and cut/burned/etc myself a lot.” Heck, we’ve been in some places where it almost seemed like an unofficial contest to see who could self-injure the most. (That’s one of the major reasons why we always avoided self-injury “support” communities, though it would be highly inaccurate to assume that we don’t or never have had problems with self-injury. Some of them actually seem to end up encouraging the things they claim to be trying to stop each other from doing.)
And yeah, we walked into the path of an oncoming car a few months ago because we got distracted by a blinking light. (We still don’t know the name of the person who saved our life, there.) On the other hand, we used to live in an area where there were a lot of commuter trains, and stories would pop up semi-regularly about teenagers (and some adults) who got hit by trains while crossing the tracks, because they had their headphones up and their music cranked up so loud they couldn’t hear the train coming. Do people who like to listen to loud music on headphones need 24-hour supervision, too, then? Especially since half the college students we know walk around with their iPod permanently on, any more.
…oh, and about starvation, what about all the ‘pro-ana’ communities out there? Most of the people I see participating in them seem to be ‘normal teenage girls,’ and yet I don’t see anyone insisting that 24-hour supervision is vital to their continued life. (Not that I think it should be, but again, it’s the problem of the double standard.)
Did it never occur to you that people do have the right to simply ignore you? Has it really never occurred to you that people, including this Mr Doherty, might deem you to be about as worthy of response as a middle of the night prank phonecall?
Maybe next week you’ll be telling how your brain ‘flatlines’ during your ‘most severe phases’ (and you’ll be sure to provide uploaded ‘documentation’ to ‘prove’ it too). Maybe you’ll also decide you’re able to see through walls — what else could possibly up the ante from your recent ‘clairavoyance’ claims? Maybe if we’re really *really* lucky, some day you’ll decide that typing isn’t ‘severely disabled’ enough and will resort exclusively to pounding on the pictures of your DV4, or that you can fly and with a little luck will decide to demonstrate, and the world will at last finally be rid of you.
The peanut choir here needn’t bother with their stale collected cries of ‘leave the poor disabled woman alone’ — Amanda Baggs is a predator, preying on those defenseless souls who really are as disabled as she’d have you think she is. You’ll find no sympathy whatsoever for her; that’s reserved for her victims.
Kudos to Mr Doherty, as well as to anyone and everyone else who simply blows or laughs you off.
Here’s to yet another voice identified as ignoring your’s and hanging up the phone.
…There’s quite a difference between ignoring someone, and saying that they don’t exist at all.
There’s also a difference between ignoring someone, and going to their blog, putting words in their mouth, verbally abusing them, making more stuff up, and being an ass. Hint: multiple paragraph posts are not ignoring people.
And anonymous is the coward’s way to verbally abuse someone. Wuss.
Whoo. A troll.
Ballastexistenz (Amanda) has never claimed to be CLAIRVOYANT (if you are going to accuse someone of claiming to do something or be something when she never did you might check the spelling at least on the key word, right?) Which leads me to believe that anon is a troll and knows full well that Ballastexistenz never claimed this, i.e. that anon is a liar and needs to be ignored.
I think you’d be right not to approve any more comments from this creepy troll.
“Did it never occur to you that people do have the right to simply ignore you? Has it really never occurred to you that people, including this Mr Doherty, might deem you to be about as worthy of response as a middle of the night prank phonecall?”
It is anyone’s perogative to ignore someone else. There are good reasons and sometimes not so good reasons to do so. An example of a good reason would be that the other person is providing harrasment or is being deliberatly rude. A bad reason would be that the other person is simply proviking critism. To ignore another in that circumstance, is called “insularity”.
“Maybe next week you’ll be telling how your brain ‘flatlines’ during your ‘most severe phases’ (and you’ll be sure to provide uploaded ‘documentation’ to ‘prove’ it too). Maybe you’ll also decide you’re able to see through walls — what else could possibly up the ante from your recent ‘clairavoyance’ claims?”
Ad hominem for the former point and strawman for the latter.
Ad hominem’s are not a valid debate tactic.
I seldom come here, I could not be accused of being one of the peanut choir here. Nor do I want you to leave Amanda alone, if you have something valid to say. If you have something beside personal attacks I would I like to see it.
Indeed no, I don’t believe Amanda had asked for sympathy. As to victims, who that be?
“Kudos to Mr Doherty, as well as to anyone and everyone else who simply blows or laughs you off.”
I am trying to find some credibility with what you say here and there seems to be none.
“Here’s to yet another voice identified as ignoring your’s and hanging up the phone.”
You stay long enough to spout off 4 paragraphs of slander and then walk out? Well good bye then….
If anon is a troll, deliberately stirring it for effect ignore it. Making deliberately false statements is a common method of baiting autistics, especially if it draws you into playing its mind games. It may be trolling here because it sees your way o being as a personal affront. That’s its problem. If you try and help that will just enrage it further. Again, it is best to ignore it and ban future comments.
anonymous libels are particularly vile
– why the vicious nastiness anyway?
and what dark corner of the imagination did this clairvoyance nonsense come from?
Goodness me Anon, that’s a pretty silly and pointless comment. Why comment at length about how easy it is to ignore someone? Why not simply….ignore them? That way you don’t make yourself look silly and we all don’t need to grieve for the lost seconds we spent trying to parse your comment. Everyone wins.
I walked in front of a car once because I was having flashbacks and running away from my teacher on a school trip, and was too upset to notice the car. It was odd. I heard squealing of brakes and saw the car in my peripheral vision, but somehow my brain didn’t think it was relevant. I didn’t see or hear it at all until I was already in front of it. I’m lucky it had working brakes.
My Dad was driving in his old Morris Oxford from the 50s and this little kid watched him approach and just as he was almost there, the kid dashed out in front of him. Dad saw this kid do the exact same thing to several other cars. It seemed to him like the boy was playing a game – a very dangerous game.
PS: hey, troll. This is how to ignore someone – don’t mention them or respond to them.
“…and what dark corner of the imagination did this clairvoyance nonsense come from?
And further more, what dark corner of the imagination did, “The peanut choir here needn’t bother with their stale collected cries of ‘leave the poor disabled woman alone’ — Amanda Baggs is a predator, preying on those defenseless souls who really are as disabled as she’d have you think she is. You’ll find no sympathy whatsoever for her; that’s reserved for her victims” come from?
That’s quite an accusation to make. I noticed the coward offered no supporting arguments to back up any of his drivel. For all we know this “anon” could be Mr. Doherty himself, or at least one of his syncophants.
If he/she responds again and can provide any proof of his/her wild accusations then fine. If not, I would just block any future comments he/she might make, as they are nothing but a waste of space.
My bet is this coward won’t show up again.
Amanda, you said: “In my opinion, all assistance, paid or unpaid, needs to be moved into this category eventually, until people do not differentiate in terms of value between bathing someone who can’t bathe themselves and providing food to someone who can’t grow their own food. These should just be things human beings do for each other.”
However, every piece of assistance comes with a price tag. Do you think we (as in society) are responsible for the high level of care you need to get along, or is it the responsibility of your loved ones to ensure that you get that care? Given that the level of care you need is appreciably higher than most people (who are able to bathe and feed themselves and shower and go buy their own food and clean their houses without incident), why should you assume that society owes it to you?
I think that a society is responsible for the level of assistance anyone within that society needs. If we value each person, we will make time (and money in places that use money) for the kind of assistance each person will need. There is a reason that we have this conversation about the kind of assistance I get and not many of the kinds of assistance, paid and unpaid, that a “normal” person probably gets (some of which I probably don’t use). That reason is not because the kind of assistance I get costs more.
The sort of person the “normal” person is (which varies from place to place) is already valued enough that their society does not regard what they do for that person as a burden or an extra add-on that can and should be taken away where possible, and that should be argued about what the person can do in order to not need whatever assistance they are getting. The society already assumes the responsibility for people like that person. If that category were broad enough to include everybody, this conversation would seem very strange and out of place.
Also, I don’t see a person or their family as separate from the society they live in.
As far as the troll goes: I have told her not to communicate with me, and I do not wish further indirect or direct communication with her. That she wants me dead speaks volumes.
Amanda responded at #2 above regarding Independent Living Centers (aka ILCs or CILs)
Co-optation: So sad, so true.
These services begin as grassroots organizations trying to fill the need only they can name in their own community. When rape crisis centers began, many women didn’t know that they had a right not to be raped, much less the power to change rape laws to recognize any person’s right to say “no” to unwanted sexualized aggression. The very best ones included vigorous political advocacy along with the social service function.
Both the bureaucrats and clever grant writers realized that, gee, here was a gaping social need that was being met at remarkably cheap wages from within the community. Wow! The grant writer creates a job, the cheap wages can now maybe subsidize a little healthcare, and the people in power don’t have to worry about changing the material conditions that made the service necessary.
Amanda, thank you for your thoughtful response.
In general, would you say your political views are to the left or to the right? Would you consider yourself more towards the socialist view or the libertarian view? (I think I know the answer but I am curious.)
I continue to be thankful for how you are opening my eyes, as a NT person who is not personally acquainted with any autistics.
I watched the report about Autistics. You are very impressive and opened my eyes to your world. A friend of ours has three children, two Autistic. It would be nice if more people learned about the condition and what happens to the patient. Your interview was wonderful and I enjoyed your views and your typing. Keep up the good work and I will read your Web from now on.
I’ve watched and read about you this past week Amanda and want you
to know that you are an inspiration and have no doubt, opened alot of minds and hearts. I believe each of us can make some sort of difference in someone’s life and sometimes some of us can make a dramatic difference in many lives. You’ve done that and I’m proud to know you, even in this little limited blog world.
Very interesting post (and I’m so glad to have “found you” again on the ‘net, I’ve always valued your contributions on various mailinglists I’ve (mostly) lurked on).
While I don’t share your scepticism towards institutions in general – my personal history is such that the best care and help I’ve ever got has been from psychiatric hospitals, while any non-institution help has been demeaning and worthless – I think you raise a very important point in reminding us that lots of things and indiviuals that in one context is deemed “in need of support” in other contexts actually GET better support through informal means.
I recently made that observation yet again: On a trip to Frankfurt a.M. I stumbled upon a small, somewhat seedy bar in one of the “bad quarters” of the city. It was open almost 24h. And except for a few “tourists” (like me and a few others) the clientele consisted of more or less “odd” people. The people who worked there seemed to really know everyone, and even on their days off looked in and caught up on the news, while enjoying their last drink for the night.
I found myself wondering how much it would strain the city of Frankfurt’s budget for mental health and social services if that little bar disappeared.
Another example I have is from my hometown, Helsinki: a small kiosk, with a not too good selection of food and baked goods. Some fifteen years ago a new owner, a “girl” (early 40-ies) took over, who liked to chat with the customers more than her predecessor. Lots of old people started spending some time with her every day, bringing their crossword puzzles over while buying milk. People left their keys with her, sent their small children to pick up after-school snacks.
But the real impact undoubtably was in the “support” she provided for the elderly and lonely.
I’ve seen some signs that “official support structures” have tried to move to take advantage of, and incorporate existing “community” resources such as these – but far too little. (Again, my experience have been that the “real institutions” like mental hospitals have been much more open to this than the so called “service providers”.)
I also really appreciated that you mentioned that people *do* survive outside “the systems” all the time. What irks me is that the knowledge and experiences of these survivors are totally lost on most well-meaning people involved in support-structures.
Not only is lots of experience, knowledge and ideas lost, an opportunity for society to save money is also lost when all structures are geared towards pushing people into some narrow mould of quasi-middle-class existance.
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